The Power of Words

I learned English as a second language. When I moved to the United States at age 17, I felt confident living life in "English." However, my scholarly English did not know much about slang words, puns, or the fact that the English language is ever changing. Some words, over time, change their meaning.

One word that has changed in meaning over time, is the R-word (retarded.)

Back in February, when there was controversy going on with this word, I wrote a post about how our family feels about this word.

Words Are Powerful, Words Hurt

Some have said we have pushed the limit in what is “politically correct.” But is it? Is it wrong or offensive to use the r-word? Is it really a damaging word?

I want to tell you about our family. I hope after you read this, that you will understand the power of words, and that some words, even when not intended to be harmful, can slowly destroy.

When my daughter Nichole was born, her diagnosis of Down syndrome hung over me like a heavy, wet, blanket. It clung to me. It robbed me from any feelings of love and I wondered if there was a way out. My motherly instinct was nowhere to be found. I went through the motions of holding and nursing (pumping actually) because I had to, not because I wanted to. I cried. I cried several times a day. There was fear in the unknown; there were questions about the future, about our family and my oldest daughter.

Down syndrome. I knew many things about Down syndrome, and I knew of one word that would be used to describe my daughter. It was the R-word. Retarded.

I knew that someday, someone at her school might say to her, “Hey you retard!” With many laughs to follow such a comment. Or we might hear someone explaining her behaviors to another by saying, “She is retarded.”

There was something I knew about the word retard or retarded. It is a word used to describe something or someone that is stupid, ridiculous, or inadequate. It is a word used to make fun of others, to point out their flaws, or to put them down. It is a word used to destroy, to tear down. Was this really a word that would describe my daughter? Was it okay to call her that in claims of it being a "medical" term or condition?

Thankfully, it did not take long for me to discover that my daughter was not what the word "retarded" means. My daughter was and is beautiful. She is not stupid, she is not ridiculous, and she is not inadequate. She has taught me more in her lifetime than I had learned in mine. She has been the greatest teacher I have had. She has inspired me more than anyone else I know. She has changed my life, the lives of our family, and of those that have gotten to know her.

My daughter has the ability to touch hearts and change lives. A quality that cannot be said of all people. She has shown me more love, joy, kindness, gentleness than I had ever known before. Indeed, her life has great meaning, great value, and she has so much more to offer.

And yet, the word “retard” continues to hang over us. Why? Because it is a word that continues to be used in a derogatory way. It hurts. It hurts our family. We fight this word, every day, every single day. We fight this word because everywhere we go, her characteristic features of Down syndrome set her apart. The stereotype that the word “retard” has perpetuated is engrained in our society, and so we fight against it, because she is so much more. She is full of potential, love, and joy.

There are obvious ways in which the r-word is offensive. But when it damages us the most is when it is said in ignorance. The facebook status or the teasing of a friend. It is not meant to be offensive, it is not meant to hurt. But even if it is not said with ill intent, it does. It hurts, it destroys.

My daughter is not stupid, ridiculous or inadequate. A word that has been used to mock people with intellectual disabilities makes othesr like my daughter wake up and face a world that has deemed her unworthy and incapable. Incapable because of a word. A word that is not who she is. She is capable, she has gifts, she has talents.

So next time you hear the R-word, next time if you think you might be about to say the R-word. Please stop and think. Think about my daughter, think about others that like her stand strong against the tide of a word that has labeled them in such a negative way, yet they have so much potential. As her family we stand with her, we stand strong, we fight.

Will you stand with us?

Usually, when someone uses the R-word, I take the time to share with people about our family, and what it means to us to hear people using it in such a way. Most do not know how hurtful it is. Some, do not know how to respond, but understand. And just a few, will dare defend themselves claiming that "educated people" use this word, because it is a medical term and some people act in ways similar to those with intellectual disabilities.

I am an educated person. I have a degree in Psychology. Most important, I am involved in the world of special needs. Every. Single. Day.

So allow me to share with you some recent news. A new law has passed where the term mental retardation will no longer be used in the medical or professional community. It has been removed, as the word has evolved and is now used in a derogatory way. The preferred terminology is now "intellectual disability."

You can click here and read the law passed by Congress.

For now, I am thankful that no official documentation will ever have the R-word when referring to Nichole. She is not a retard, not to what this word has come to mean. She is not stupid, ridiculous, or inadequate. She is simply Nichole, a little girl, with many many gifts, talents, and abilities. Some of which, have changed my life.

From Mutterings and Mussings

This beautiful girl you see is Lucy. When Nichole was first born I found a wonderful forum for parents of children with Down syndrome. Lucy, and her mommy Courtney was a member of this forum, and since we both had babies, I really felt a connection with Courtney. I valued that they had journeyed with Down syndrome a little bit longer than we had and ever since then I have been following their family blog.

Just yesterday I got to read Lucy's birth story for the first time! I was surprised at how similar our stories were.

So I wanted to share their story with you, since it is down syndrome awareness month. Happy reading!

The Beginning

It really all started with a phone call in February, though I wouldn’t know that for another five months. The day after my 20 week ultrasound, the obstetrician’s office called to tell me that they thought they saw an echogenic foci on the baby’s heart. They told me this was a “soft sign” for Down syndrome. They asked me to come back in for a Level II ultrasound.

I remember being so scared. I couldn’t get an appointment for five days for the follow-up ultrasound. They were the longest days I had known to that point. I didn’t want to tell many people about this “complication”, but I was really struggling with pretending nothing was wrong. We were in the process of buying a house at that time, and had just put a bid in on a house I loved. Mark came into the room and I was crying. He thought it was because they had accepted someone else’s bid. I had never cared less about a house in my life.

My mom went with me to the ultrasound. “Everything looks perfect.” Sigh of tremendous relief. A few more months of blissful ignorance.

I felt my first contractions on Saturday, June 30…literally just moments after taking care of the final preparations for Lucy’s arrival. In the car after having the carseat inspected, I patted my tummy and said, “ok, Peanut, we’re ready for you now.” She listened.

The labor itself was horrendous. I didn’t know it at the time, but I was having back labor. This fooled me into believing that I was farther along than I really was. Sunday night I made Mark take me to the hospital, convinced this baby was coming any second. They sent me home at 1 cm. I felt foolish and vowed not to go back until I was sure she was on her way. The end result was that in a stubborn snit I waited far too long and my precious daughter was dangerously close to being born on my living room floor.

Mark was at work, so my sister took me to the hospital and stayed in the delivery room for the whole ordeal. I progressed from 5 cm to 9 cm in less than 25 minutes. No epidural. I was sure I was going to die. The consolation was that she came fast. I barely pushed. Mark barely made it in time. From the moment of checking into the hospital until the moment she was born…56 minutes.

They took her to the nursery immediately for observation. I was so disoriented that this did not alarm me. They said it was nothing to worry about, but they wanted to monitor her breathing. They came back quickly and said she was breathing fine, but her temperature was low so they were going to put her in the warmer for a bit. They took me to my room, but we stopped by the nursery so I could hold her for a few minutes. She was gorgeous. She looked like Mark’s Mom, brother, and aunt. I was smitten.

It wasn’t terribly long until they brought her in to the room. Maybe an hour? I was eating and don’t really remember. Life was still too surreal to be keeping track of time. We held her. Took pictures. Sometimes when looking back I feel like something was off, something that I couldn’t put my finger on. But sometimes I think it’s just hindsight.

A few hours after Lucy was born, maybe about 4 or so, I was in my room with Mark and his parents. The pediatrician came in to examine her. She was listening to her heart. For a long time. A really long time. My FIL, not one to beat around the bush, questioned the doc on the intensity of her exam. This pediatrician, whom I had never met before, looked at him and said, “well you know the baby has Down syndrome, right?” (I remember it slightly different. I thought she said, “we think the baby has Down syndrome”, but Mark and his parents agree on the original version so that’s what we’ll go with). Mark responded with “Excuse me?”, to which Dr. Bedside Manner replied with, “Are you the baby’s father?”. I am sure there is a lawsuit in there somewhere, but when it was relevant, I didn’t have any fight left in me. Needless to say, this woman is NOT my pediatrician.

“Well, you know the baby has Down syndrome, right?” No. I didn’t. I had always heard the expression “all the air left the room”. I had never felt it until that moment. It left the room. It left my lungs. It was as if someone had physically punched me in the gut. I was shocked. But given our scare way back in February, I wasn’t necessarily surprised. I wonder sometimes if that made it easier. That little non-warning.

The doctor then preceded to show us all the physical characteristics that lead them to the conclusion that Lucy had Ds. After she left, we preceded to explain them all away. Her almond shaped eyes, well, Mark’s family has almond shaped eyes. The small, low set ears, well, I have really tiny ears and I have always felt they were a little low. The slight curvature of her pinky, well, I have a good friend whose pinkies are slightly curved and she most certainly doesn’t have Down syndrome. We’ll wait for the karotype to come in, but we’re pretty sure they’re mistaken.

But, later that night, when everyone else was gone and it was just me and Lucy, I unswaddled her. I looked at her feet. I could not explain away that gap between her toes. And in my heart I knew, though I wouldn’t admit that I knew until the next day when her new cardiologist told me that she had a heart defect and would require open heart surgery within the first year of life. When he walked out, Mark and I both admitted we didn’t need to wait for the karotype any longer.

When she was two days old, we took her home. Knowing what I know now, about how many babies with Ds spend time in the NICU, I feel tremendously blessed. We took her home, relatively healthy, and began the long process of rebuilding our reality

Friendship

A couple of years ago, one of our MOPS mentors talked to our group about friendships.

There are friends for the road. These are the friends that come into our lives as we travel the different roads of life. These are friends that come and sometimes go, but dear friends as we share significant life stages or life happenings with.

And there are friends of the heart. The friends that are with us forever. Those friends that we have known for a long time, and that even when years have gone by, when we get together, our hearts are still connected.

Two weeks ago I traveled to Mexico for my grandmother's funeral. In my trip, I got to see a few of my friends of the heart. Friends that I have known for a long time, and friends that are so dear to me. Spending time with them makes me realize how much I miss them, and how I wish we could do life together, go out for a cup of coffee or for lunch.
My friend Yuri. We have known each other since we were in sixth grade. We were both moving to the same town and ended up in the same room at our middle school when we were taking our acceptance test. She sat in front of me and we really hit it off. The first day of school, in seventh grade, I ran to see the class list and was relieved that we had been placed in the same class. I waited for her by the door and as soon as she walked in I knew I was not alone.

What a dear friend she has been to me for seventeen years! (I know you are all doing the math, how old am I?)

We shared all the teenage drama, boyfriends, heartaches, family frustrations. We laughed and cried together, and her parents and little brother (now a handsome young man) were like family to me.

I got to see Yuri two times when I was in Mexico, and we talked and talked and talked. She is a beautiful woman and I love her dearly. Amazing how after years of not seeing each other, it did not matter at all. She is still, and will always be, one of my closest friends.

I met Rumi when I was 3 years old. A very long time ago. Our moms were friends, but every morning we greeted each other at school with a frown. Play dates rarely ended well. Then she moved to the US for a few years and came back in third grade. Although I was not a good friend at the beginning, by the end of the year we decided to like each other.

Anyone that knows me, knows Rumi. My friends from college know her, she came to visit. My friends from camp know her, she came and volunteered for a month. On my wedding, she stood by me. And even people from our church know her, as she went on a missions trip to Ensenada to a special needs orphanage to help translate. A life long friend.

Amazing that God, who created us to his image, created us to be relational beings, and He blesses us with friends that we can do life with.

Today, I am thankful for my friends of the heart.

For more on my thoughts on friendship, you can click here and read an article that was published by Christianity Today in MomSense magazine.

I'm Down With You

I am looking forward to this documentary! I have the book by my bedside and the pictures are beautiful!

This project was started not by a parent of someone with Down syndrome, a sibling, or a close friend. Jagatojoti Khalsa found beauty in an unexpected place, and he could not turn away. He was touched, and he has used his many talents and gifts (such as his book) to honor and share these wonderful individuals with an extra chromosome.

You can click here and take a look at his projects and amazing photos.

Down Syndrome Awareness: Answering Your Questions: On Physical Characteristics

I following your link to the information about single transverse palmar crease. I have this in my right hand.

A single transverse palmar crease appears in about 1 out of 30 individuals. So really, it is more common than you think! Sometimes, as it is the case with Down syndrome, fetal Alcohol, and other conditions, this can be one of several markers for such condition.

Medline Plus has some more information on the transverse palmar crease if you want to check it out.

What's interesting is that I know people who have maybe one of these characteristics that do not have Down syndrome.

Yes, many of the characteristic features of Down syndrome are found in people that do not have Down syndrome. Remember, that the characteristic of Ds are simply seen more often, but not exclusive of Down syndrome.

Nichole, for example, does not have a transverse palmar crease.

My ears, for example, sit a little lower on my head.

I know several people that have the transverse palmar crease and do not have Down syndrome.

I have a friend that has tiny little ears that bend slightly at the top and she does not have Down syndrome.

Some of my nieces have the tiniest bridges of the nose.

I have a niece with hypotonia.

Like I said before, these characteristics can be found in the global population, it is just that several of them seem to come together for individuals with Down syndrome.

Down Syndrome...Because Language Matters

When referring to someone that has Down syndrome, it is important to remember to use People First Language. It communicates that the person is more important than their diagnosis. It means that they are an individual outside of their diagnosis or genetic makeup. Nichole is not Down’s, she HAS Down syndrome. Down syndrome does not define who she is, and she is not the syndrome, she is just Nichole, she has Down syndrome, she has green eyes, and she has dark hair.

HERE you can find a guide of different ways to use people first language.

Here is what the National Down syndrome Society says about the preferred language for Down syndrome:

• Down vs. Down’s - NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.

• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

• Down syndrome is a condition or a syndrome, not a disease.

• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.

• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

Physical Characteristics of Down Syndrome: Taking a Closer Look

It was 1866 when an English Physician named John Langdon Down first described the similarities of the condition that came to be known as Down syndrome (Down, named after him.) This happened before we had any insight into the genetic makeup of individuals, so it was not known that the presence of the extra 21st chromosome is what causes Down syndrome. At the time, an individual would be diagnosed by noticing certain characteristic physical features. Let's take a closer look at what some of these physical characteristics are.

Nichole has many of the characteristic facial features of Down syndrome.

Eyes: The eyes of an individual with Down syndrome might slant upwards a little bit and are almond shaped. They might have small folds of skin at the inner corners, which are called Epicanthal Folds.
The outer part of the iris might have light spots that are called Brushfield spots as shown in the picture bellow.

Nose: The bridge of the nose is smaller than usual, giving the impression of a button nose. This sometimes gives the appearance of a slightly broader nose.

Ears: The ears in individuals with Down syndrome can be smaller and the tops may slightly fold over. The ears set slightly lower on the head.

In the picture below, you will notice Nichole's smaller bridge of the nose (appears as if she did not have a bridge of the nose) and her small ears that do sit very slightly lower.

Neck: Some individuals with Down syndrome (and you can see in Nichole's previous picture to some extent) have a "thicker" neck, or what appears to be an excess of skin on the neck. This is one of the markers for Down syndrome that can be caught in an ultrasound.

Below is a picture of a stunning young lady where you can see her neck a little better.

Flat Profile: Individuals with Down syndrome tend to have a "flatter" profile. This is due in part to the small bridge of the nose, but also the forehead tends to be flatter.

Mouth: The mouth and tongue are made up of many muscles. Individuals with Down syndrome have low muscle tone, and therefore, the muscles in the mouth and tongue might be weaker. Contrary to what was believed before, the tongue is not bigger than normal. When the tongue is sticking out, it is a matter of low muscle tone and it can be worked on through oral exercises and speech therapy.

The muscles surrounding the mouth are also weaker and some individuals with Down syndrome, appear to have an upside down smile (a frown.) As you can see in Nichole's picture bellow, she seems to be sad, when in reality that is her "resting" pose.

Teeth: Teeth may come in late and in an unusual order. For example, Nichole got her bottom 2 teeth first, followed by a random order (her molars came in before her two top teeth.) For some individuals their teeth might be small, unusually shaped, or out of place.

Nichole, for example, has a tooth out of place, it sits way back behind the others. You can see that in the picture bellow, your left hand side between the front tooth and the canine tooth. (Forgive the messy face, it was the best picture I had of her teeth!)

Hands: Individuals with Down syndrome tend to have shorter and chubbier fingers. As you can see in the picture bellow, many individuals with Down syndrome have just one crease across their palm, called the transverse palmar crease. For some, like for Nichole and the baby from the picture bellow, the pinkie finger appears to be crooked.

Feet: There may be a gap between the big toe and the rest of the toes. There might also be a deep crease on the sole of the foot where the gap is.

You can see Nichole's toe gap in this picture. I absolutely love it! And it is great for flip flops!

Low Muscle Tone: One of the most significant characteristics of Down syndrome is low muscle tone (discussed briefly as we talked about the mouth and tongue) or Hypotonia. Low muscle tone affects all the muscles in the body. A baby may appear "floppy" as shown in the picture bellow. It affects movement, strength, speech, and development. It cannot be cured, however, there are many therapies available to help individuals with Down syndrome improve their muscle tone, such as Speech Therapy, Physical Therapy, and Occupational Therapy.

Hair: Some individuals have thin and straight hair. However, as you can see bellow, Nichole has a head full of beautiful curls.

Not all individuals with Down syndrome exhibit all of these characteristics. It is important to remember that individuals with Down syndrome resemble their families more than they resemble one another. After all, 46 of their chromosomes are perfectly normal.